Back from Neuro - PNP

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Re: Back from Neuro - PNP

Postby Xina535 on October 2nd, 2014, 12:42 pm

I am so sorry you are in this dark place. I think technically, they did all the tests known to give you and this is technically what they have to tell you based on the findings, but I know emotionally, mentally and physically, that is not the world you are living in. I am in Germany so if you need any support or want to just talk, please let me know.
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Re: Back from Neuro - PNP

Postby German2 on October 3rd, 2014, 8:38 am

Dear Xina,

Thanks a lot, Xina! I hope so that you are right. They are all telling me that I have to do sports sporst sports...I hope this helps. I try harder. I have no power in my legs and feel so sick in general. As if I woud have feaver but I don't have. And this sets me into panic mode..Also both of my arms were getting smaller. But no one agrees. 2 strenth tests were ok. The neuros told me, I could do sports neurologically. It would be all in my brain. That would be calles perceived weakness, I guess. I still can do my daily standup exercises. But legs are shaking after exercises. One of the neuros told me, MND would not show such diffuse weakness. But I think Polyneuropathy does. But also in that case I have to do walking walking walking to save my muscle strenght as long as possible. A little bit strange is that my reflexes turned from middle brisk to low. In PNP one looses the reflexes completely. But it is good that it has not turned to the other way, that they got hyperreflexes I think.
How are you doing? Your stay in the US seems to be very hard for you with all your symptoms. How is your voice doing? Has your grip got better?
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Re: Back from Neuro - PNP

Postby muppetdog on October 3rd, 2014, 8:23 pm

German,

I also shake like crazy after small workouts. For me, it takes a couple weeks building up through weakness and fatigue. It does make me feel better, but it take a few weeks of crap.
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Re: Back from Neuro - PNP

Postby German2 on October 3rd, 2014, 9:12 pm

Hi Muppetdog,

it's good to know that I am not alone with that. My buzzing in foot is still constant and yesterday I has had suddenly sharp pain in my toes and a somewhat lasting pain in my failbone when I lay in bed. Maybe the clinic would summarize it under the "somatic disorder"", but I can no longer believe...
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Re: Back from Neuro - PNP

Postby muppetdog on October 3rd, 2014, 9:20 pm

somatic disorder? Where you traumatized as a child or something?

European Dr. seem to be really into the whole "Oh, we can't figure it out, so you are a nut. Here are your nut pills"

I get a lot of buzzing in my feet and legs, from time to time, also. Sometimes constantly. I also get the shooting electric type pain in my feet and other places. It comes and goes but kind of sucks. It has never gotten any worse. I know after a walk 9 times out of 10 my feet will buzz for an hour or so. Right now my abs are twitching, weird. Oh, and my feet are kind of pulsating off and on buzzing.

It really sucks that there are not any better answers out there for unexplained neuro symptoms and fatigue.
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Re: Back from Neuro - PNP

Postby German2 on October 4th, 2014, 1:58 am

yes, muppetdog. It is exactly like this. And they don't even make a secret out of it. They were telling my that there are symptoms they can not explain with my buliding lots. So they write "somatic disorder". And one step further...As a somatic disorder happens always in minimum of two organic systems, they attributet me with a diarrhoe, which I never had and never mentioned. That is the way they work. This is more than lying.

The buzzing since 2 weeks drive me nuts. It does not stop. But I don't feel it when I walk. And I don't feel it in the night. Up to now....
Yesterday I had dizziness 2 times. Hope this is just a coincidence...
It is such a long way to get the diagnosis, when you don't have clear related symptoms in Germany. And I think meanwhile, this is intended in the German health system...
I never know which symptoms come new to me the next day. I am always afraid that I wake up and I cannot use my leg anymore....
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Re: Back from Neuro - PNP

Postby Xina535 on October 5th, 2014, 9:26 am

I understand, I've heard the sports thing before. I have heard the "I don't know what this is" also, and was diagnosed with somatic (here in Germany).

The stay in the US was challenging, but I am challenged anywhere I am. As long as my body and brain are with me, I'm challenged....dealing with hand grip getting weaker and these throat issues.

I know now that my doc thinks all is because of somatic. Why? The stool test she ordered for me to try to figure out what is going on with my throat is Self Pay of (70€) because in the fine writing the doctor does not deem it as medically necessary. She advised me to up my anti-anxiety meds. Meanwhile, I've got these things going on causing pain when swallowing, voice change/hoarseness, right chest pain going on for a loooong time (and more) and they are not taken serious at all, because of my anxiety history.

I almost went to the ER while in the US for chest pain, for help and also to see how different their standard of care is now (what kind of tests would the do for the symptoms I had?), but I was scared of being stuck with the bills in case my travel medical insurance wouldn't cover it or all of it. Seeing as how I went to the urgent care center over there for yet another UTI and got bills worth over $1000 just for them to test my urine and prescribe me antibiotics. I submitted this to my travel insurance and am waiting to see what/when they pay.

$1000+ for simple UTI. Was the cup I peed in made of gold?
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Re: Back from Neuro - PNP

Postby German2 on October 5th, 2014, 11:26 am

I've send you a PM...
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Re: Back from Neuro - PNP

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